sleep apnea surgery. why not to do it.

I have sleep apnea and underwent surgery with negative results and experiences. This is not uncommon. Here is a recollection of it and some takeaways and pointers. The doctors I saw Riley and Powell claim to be the fathers of sleep apnea surgery.

Just wanted to post a review of the procedures offered and pioneered by Nelson Powell and Robert Riley at Calsleep in Palo Alto (Stanford). I was a patient that underwent several of their procedures with them and had a disastrous experience. Not only did their treatments not work, the result and process was worthy of a malpractice suit. For starters, the doctors do not provide adequate explanation of the procedures which are in fact highly experimental, risky, painful and invasive. Going into the surgery I did not realize that genioglossus advancement (extension of the tongue) involved cutting a hole in my jaw bone and extending a piece of tendon connected to my tongue through it. This is something I discovered only after I saw a screw in my jawbone in an x-ray. In spite of this and numerous other procedures I went through, my sleep score was actually the same afterwards and I use a CPAP now. Since this story could drag on into a book, I will summarize below some pointers and questions for you to ask your doctor if you are considering sleep apnea surgery. Please forward this and post this on other blogs so all others with sleep apnea considering surgery can learn from my experience. If you have a similar experience, please share it with everyone also. You are doing a good deed and could help a lot of people in need of it.

These are real life experiences that these doctors will not tell you:
-The procedures are incredibly painful, not during obviously, but afterwards. Every piece of tissue in your face and throat that comes into contact air when you are breathing will have been cut. In typical surgeries, wounds and incisions will only hurt when you irritate it. After sleep apnea surgery, every breath you take causes pain. I counted the agonizing minutes before every dose of the liquid codeine I was prescribed.
-The procedures are incredibly experimental. Many of the past cases were failures. The doctors quote a 20% failure rate (which is quite high) but other ENT doctors that don't condone surgery for sleep apnea or are neutral about it will tell you it's far higher. Members of the Stanford Sleep Center will tell you the same.
-The procedures are incredibly invasive. The doctors make it sound like a cinch. ICU for a few days, back to work in a week or so. This is the bare minimum and not what I experienced or recommend. Life was hell after the surgery and I was immobile for days. My head was swollen by double it's size. Members of the ICU and ethical doctors will tell you the same.
-The doctors do an unethically inadequate job of describing the procedures deliberately. They will tell you to look at their website to learn more. The CalSleep website does a CRIMINAL job of describing the procedures. Particularly genioglossus advancement. I had no idea about the extent of the surgery after reading it: http://www.calsleep.com/services-maxill ... ctors.html. There is no indication that a segment of the jawbone is sawed open and a screw is inserted into the jaw. The description even says it can be done without general anesthetic. There is no way that would be possible for the procedure I got.
-These doctors have NO AFFILIATION with Stanford School of Medicine. Adjunct means they have no permanent or full time positions. You will not see them here: http://med.stanford.edu/profiles/frdAct ... me&tab=fac. It is highly unethical how they market their bios: http://www.calsleep.com/md-powell-calif ... -alto.html
-Of the 4 procedures I got, not a single one of them benefited me. I even still have blocked sinuses and turbinate reduction is one of the most common procedures around. I list all of them below.

Genioglossus advancement, pharyngoplasty, uvulopalatopharyngoplasty, radiofrequency treatment of nasal turbinates. The simple explanation in order of appearance is extension of the tongue, removal of soft palate tissue, fusing of tonsil to top of mouth, radiofrequency shrinkage of turbinates.

Questions to ask if you decide to go forward:
-Describe in exact detail each procedure? Assess the honesty of their answer. If they are not forthcoming, find another doctor. Do not believe them or their website. Search for more resources online. This one does a more decent job of describing the procedures: http://www.sleepapneasurgery.com/pharyngoplasty.html
-What is the success rate of each procedure? How did you calculate it? The doctors may try to intimidate you when you ask. Don't let them. This is your body under consideration and the procedure is very costly. Ask for publications of the actual studies they did to calculate these rates. For any statistic in the field of medicine to be credible, it needs to be published in a peer review journal. If their studies aren't published, then they could have completely fabricated the data. Powell and Riley do not provide credible evidence.
-What is the pain level of the procedures DURING RECOVERY compared to other surgeries? What would you compare it to?
-What is the invasiveness of each surgery? What would you compare it to?

Some more resources below:
The Calsleep website here:
http://www.calsleep.com/

The description of genioglossus advancement from Calsleep here (I quote below):
http://www.calsleep.com/services-maxill ... ctors.html
Mandibular & Maxillary Osteotomy (Genioglossus Advancement) This is designed to place tension on the tongue and improve the airway behind the back of the tongue during sleep. During sleep the main tongue muscle relaxes and often allows the tongue to fall backwards into the airway. This muscle attaches to the inside of your lower jaw to a tiny projection of bone the size of your little fingernail. If a segment of bone containing this muscle is pulled forward and stabilized, it can stabilize the airway space behind the tongue. This procedure does not move the teeth or the jaw and can be done in some cases without the need for general anesthetic.

Good luck and spread the word. CPAP is great...

While I happen to agree for the most part, you are posting this multiple times in multiple topics and whether you are trying to be sincere OR spamming links is going to be brought into question.

Cheers

Robert Riley is a crook. Perscribing highly invasive sleep apnea surgery to me for sleep apnea which resulted in a lower sleep efficiency index and a jawbone infection requiring intravenous antibiotics. I had a moderate case of sleep of apnea and he told me that it was severe and that I had a very high chance of premature stroke or heart attack. He is since left Calsleep where he was practicing with Donald Sesso.

My take is similar, but much more general. If you can't stand CPAP (after you gave it a real try) or it's not effective, then you can look into these options. CPAP can be discontinued, surgery is probably not reversible.

I saw Dr. Sesso for a consult last year and found him very professional and willing to answer my questions. I chose not to follow his recommendations for various reasons but I had no regrets about seeing him.

Even though the original post is from 2012, it provides excellent advice as to what issues to cover regarding consult for sleep apnea surgery.

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